Re: Re: My newest Dr visit and important questions about nerves

[Guest guest]

Hi ,

I've NEVER lost hair when on Placquenil & neither has my daughter. However,

we both lose hair when having a Lupus 'Flare', which always comes back.

When you have always had thick hair, you normally can always get it back by

taking a lot of protein & making sure your hormone levels are normal. The

worst part of taking Placquenil, for me, are the 6-month eye examines. The

retinal x-rays are very painful to me, as my eyes are so extremely

sensitive.

Placquinil has been used for many years, originally for malaria, years ago.

At least, there is not likely to be a 'Class Action Lawsuit' re this

medication. My eye doctor is from a middle eastern country, and he views

plaquenil as a really 'safe' medication, similar to aspirin.

Hope this helps!

Blessings,

MM / NSIF

----- Original Message -----

From: <cjheer@...>

< >

Sent: Tuesday, September 18, 2001 7:27 AM

Subject: Re: My newest Dr visit and important questions

about nerves

> Wonderful news geeze so what is a good pain med I am sick of this

> crap and I think the lortab works so why stop it? My doc in Ca

> thought it was fine to take, these people here are more conservative.

> I have already had a nerve conduction study and an MRI the only thing

> I have not had is an emg but all the other tests were negative and

> that was when I still had implants and was much sicker than I am now,

> so what to do?

>

> He recommended plaquenil as well, I am leary of that medication

> because of the side effects of hair falling out, and also it is a

> drug that works but they don't know why? I would like to know why

> something works before I take it, and not be a freaking giunea pig

> like I was with implants.

>

> THanks for the info Martha, I do not have any esophageal probs yet ha

> ha ha, I know not funny,

>

> Shit what now? This is ridiculous, I think the lortab were better

> than the celebrex anyhow

>

>

>

>

>

>

>

>

> @y..., " MARTHA-NSIF " <MAM-NSIF@P...> wrote:

> > Hi ,

> >

> > I think you probably saw a reasonably good rheumatologist, as it

> sounds as

> > if he is at least somewhat knowledgable about implants.

> >

> > Now I would like for you to question him about why he would put you

> on a

> > drug (Celebrex) which already has a " Class Action " Lawsuit working

> against

> > it, the same as Vioxx. Both will tear your guts apart, and if you

> have even

> > a slight problem with Esophageal Reflux, these drugs exacerbate that

> > problem. 'Don't want to scare you, yet these are facts he should

> know.

> >

> > It's relatively easy to have a good neurologist determine if you

> have

> > demylenation of the nerves with a brain MRI, and/or nerve condution

> studies

> > of your body limbs -- one side at a time! If you do have

> demylenation of

> > the nerves, there are things that may help re-mylinate the nerves,

> and

> > relieve the 'nerve pain'! I have MS, yet no one who doesn't live

> with me

> > would normally never know. However, I cannot rely on 'natural

> supplement'

> > to handle this problem, although I take A LOT of them.

> >

> > I hope this is somewhat helpful information. I am NOT a medical

> > professional.

> >

> > Blessings,

> > Martha M.

> > NSIF

> >

> >

> > ----- Original Message -----

> > From: <cjheer@i...>

> > < @y...>

> > Sent: Monday, September 17, 2001 7:26 PM

> > Subject: My newest Dr visit and important questions

> about

> > nerves

> >

> >

> > > Saw a rheumatologist in Pocatello today, which is an hour from

> Idaho

> > > Falls, he seemed nice enough and said I was probably smart to

> have my

> > > implants out. He told me he thinks I have nerve damage causeing my

> > > pain in my hands and feet more than likely that is the reason it

> > > feels so achy right on my heel whihc is just bone and not joint or

> > > muscle, and he told me he thinks I should see a neurologist again

> for

> > > another work up, another thing whihc kind of pissed me off was he

> > > said if it wasn't for my positive ANA titers he would think maybe

> it

> > > was all phsychological, can you believe it, oh so frustraitng. He

> did

> > > say however that he believes me and the ana proves I have

> something

> > > going on and he wants me to try to take a new medication I am sure

> > > everyone has heard of called celebrex and to get off the vicodin

> > > cause it isn't helping it is just masking the pain, I know I am

> > > basicaly addicted to the vicodin which is not good, but hell I am

> so

> > > tired of hurting that I am willing to be addicted, so

> frustrating, I

> > > am going to give the celebrex a shot and will let you all know of

> how

> > > it works, but as we know, most meds and me don't mix well so keep

> > > your fingers crossed. I want to know how many of us on this site

> have

> > > hand and feet pain? THis has got to go with the theory that the

> body

> > > attacks the nerve sheath because it is similair in make up to the

> > > implants, it explains it so simply, why isn't anyone getting it? I

> > > mean it explains the brain stuff and the pain, arg frusttration to

> > > the max, I know my spelling is off I am just angry about it all

> right

> > > now. I am tired of freaking foot pain, it is nerves I am convinced

> > > and not lupus, lupus people swell up and stuff I just ache ache

> ache,

> > > and yes la I think soaking is great and massage is the

> best my

> > > husband rubs my feet and it feels so good, it helps so much but

> only

> > > for so long then it comes back again. I think working out is the

> best

> > > medicine of all, afterwards at least for a little while it really

> > > helps, then I admit it makes me tired, like today I had to take a

> > > long nap after I did my spinning class, but I feel ok head wise,

> my

> > > head is still tons better than with the implants

> > >

> > > What supplements besides NADH and Vit B 12 etc are good for

> nerves? I

> > > need to find out cause I am starting to become more and more

> > > convinced I suffer nerve damage. I still believe it can be

> reversed.

> > >

> > > Thanks for being here

> > >

> > >

> > >

> > >